Harlequin Ichthyosis Awareness

by Michelle SullivanMay 09, 2017

Brenna was born in December 2011 and unexpectedly diagnosed with an extremely rare and severe skin disorder called Harlequin ichthyosis. Brenna makes skin about 10 times faster than most people and can't shed it quickly enough, leaving her with an appearance of a terrible sunburn all over her body. Because of this disorder, Brenna's skin has trouble doing its jobs... she has difficulty retaining moisture, keeping bacteria out (so she gets skin infections easily) and regulating her body temperature; she can't even physically sweat. Our days are filled with applying a thick lotion called Aquaphor to keep her skin moisturized and comfortable, doctors and therapists, a long daily bath where we can exfoliate the extra skin she makes, and lots of eating because Brenna’s body uses so many calories simply to produce skin! Brenna is small for her age, has very little hair because the over-production of skin kills off her hair follicles, and her extremities and some of her features are tiny because her tight original skin didn’t allow them to grow. Because of this, we encounter a lot of stares, questions and ignorance from people who assume we “let” her get severely sunburned. But our days are also full of uninhibited joy, real contentment, gratitude and faith in God. Brenna is determined, extroverted, and sweet and sassy all at the same time. She is so attached to her parents and shares a unique bond with her brother Connor – they are each other’s biggest fans. Physically, Brenna is much different that we expected. And we are discovering day by day, week by week, just how beautiful different can be.

In August 2016, my book A Different Beautiful was released and is available on Amazon and in bookstores. It shares about our family's experiences raising a child with special needs/physical differences and what we have discovered about celebrating the beautiful goodness that God has placed in our lives. #ADifferentBeautiful #Harlequinichthyosis #ichthyosis